Monday, June 13, 2011

Will was admitted to the Clinic earlier today (Monday, 6/13) to start the Ketogenic Diet. We will likely be here through Thursday. While we are here, he is also scheduled to have a 3 Tesla MRI and FLAIR study. A normal MRI is only 1.5 Tesla, which means that this will basically be like an MRI in hi-def. We are hoping that the 3T MRI will show Will's brain in much greater detail and give the doctors some valuable data. The FLAIR study was requested by Will's neurosurgeon, as it can sometimes help to identify which areas of the brain need to be removed.

Will's first Ketogenic meal

Will got his first "meal" on the diet tonight. We were blown away by the small amount of food they gave him! He basically got a few tiny shot glasses of food, which included straight butter and heavy cream. When they brought the little portion cups in, we halfway thought they were bringing us Jello Shots, but we were sadly mistaken. Regardless, when they checked Will's blood levels tonight he was already into "moderate" ketosis, which is a good thing. We will need to get to "high" levels over the next few days.

We are really praying hard and crossing our fingers that this diet will work, and we hope that everyone reading will do the same. It would be so amazing if we would be able to treat him without drugs or surgery!

Introduction

Hi, my name is Will, and I am 6 years old. I am loved very much by my parents, Dan and Kelly, my big brother Jack (age 9) and my baby brother Cole (age 2). I was diagnosed with Infantile Spasms in February of 2011. My parents created this website to keep our family and friends updated about my journey with this rare and catastrophic form of pediatric epilepsy.

After numerous treatments failed to stop the seizures (Topamax, B6 Pyridoxine, ACTH, Keppra, Vigabatrin, Depakote, and the Ketogenic Diet) doctors removed the left temporal lobe of my brain in November of 2011, which stopped all visible seizures but my development still remained stagnant. I then underwent a two stage surgery to remove my left parietal and occipital lobes in September 2012. Today, I am a walking, talking miracle and my family celebrates every seizure free day that we have been blessed with.

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